Welcome, Guest!

By registering with us, you'll be able to discuss, share and private message with other members of our community.

Karen

Administrators
  • Content count

    6,405
  • Joined

  • Last visited

  • Days Won

    145

Karen last won the day on April 19

Karen had the most liked content!

Community Reputation

16,761 Excellent

About Karen

  • Rank
    Administrator
  • Birthday 26/08/1962

Profile Information

  • Gender
    Female

Converted

  • Biography
    Where do I start? I had a Subarachnoid Haemorrhage in 2005 and life became very different!
  • Location
    Wimborne, Dorset UK
  • Interests
    James Patterson, Lynda La Plante, Cranford, Marian Keyes, Cathy Kelly The Great Outdoors, Planes, Tr
  • Occupation
    Running this site
  • SAH/Stroke Date
    25/07/05 SAH - aneurysm coiled

Recent Profile Visitors

1,438 profile views
  1. Hi Jean, You're doing well if you can read 20-30 pages at a time. The author of the book, Alison Wertheimer also had a SAH and she fully understands its fallout ... Sorry to hear that you can't find a local support group, but I'm glad that you've found some comfort with her book. x
  2. Behind the Gray has been approached by Oracle Fieldwork (details below) who are looking for volunteers from the UK who've suffered an Aneurysmal Subarachnoid Haemorhage. They are specifically looking to speak to patients aged between 18 - 70 who are 3 - 12 months into their recovery. However, if you fall slightly outside the upper range of 12 months post SAH (18 months max), you may still be considered. Interview to take place last 2 weeks of May 2018. Oracle Fieldwork are an independent market research agency working within the codes of conduct of the Market Research Society (MRS) and British Healthcare Business Intelligence Association (BHBIA) and complying with Data Protection legislation. The anonymity of anyone taking part in this study is guaranteed and the research is not intended to influence views or opinions in any way. If you're interested in taking part or have any questions please contact Paul directly via email or phone rather than asking questions on the forum, as the Admin Team at Behind the Gray aren't involved with the research and therefore we won't be able to answer any questions or concerns that you may have. Many thanks. ------------------------------------------------------------------------------------------------------------------------------------------------------------ My name is Paul Socha and I work at Oracle Fieldwork, a medical market research agency specialised in pharmaceutical and medical market research. Project Background We are working with our client who is interested in providing validation of the use of two questionnaires in aSAH patients. The objectives of the research activity are to: Assess how relevant the content of two patient outcome questionnaires is to aSAH patients and Understand what treatment outcomes are important to aSAH patients We hope that this research will allow to understand how aspects of these questionnaires could be more personally relevant to aSAH patients and for use in further aSAH treatment evaluation. We are specifically looking to speak to 25 patients based in the UK that have had an aSAH in the past 3 to 12 months and are between the ages of 18 and 70. We are asking you to take part in a 90 minute interview in the last two weeks of May. We expect that it won’t take the full 90 minutes but want to give you enough time to look through and comment on both of the questionnaires (which will be based on an iPad) as well as time to discuss the treatment outcomes that are important to you. If you live less than 2 hours of travel from London, the interviews can be held face-to-face, in a location that is convenient for you, for example in your home. If you live elsewhere in the UK, interviews will be conducted via video-call. If you think you will require assistance with operating an iPad during the interview, you are welcome to bring your partner/spouse/relative/friend for any assistance. You will receive an honorarium of £70 (remote interviews) or £80 (face to face interviews) for taking part. This will be in the form of a bank transfer or Amazon voucher – whichever you prefer. There will also be a donation made to your support group for taking part in this study. If you are interested in taking part or have any questions regarding the study then please do not hesitate to contact me at Oracle Fieldwork on 0161 284 8889 or paul@oraclefieldwork.com Kindest regards, Paul
  3. Hi Umut, How is your Mom Nug today? I truly hope that she regains consciousness soon. It sounds as though you and your family are doing all of the right things with playing messages of family voices that are familiar to her. Tough times for you all, but it sounds as though Nug has a lovely supportive family around her. x
  4. Pat if you private message me with a password that you want to use, I can reset it for you.
  5. 1 Year Anni-versary

    Well done Kay! Relax and best wishes on your road to recovery. xx
  6. Hi Swishy ... love your user name and a great word to describe how it feels! Yes, balance and eye issues were huge for me (I had a third nerve palsy to my eye which gives double vision) .... I still get the odd balance problem when I'm having a bad day or particularly tired and need to be a bit more dehyrdrated or just take it easy. One size doesn't fit all with SAH recovery and at 12 months post SAH and returning to work, I would perhaps say, that you're doing pretty well, even if a bit "Swishy!" I also had all of the vestibular issues and the head and eye exercises took me truly out of my comfort zone! From my own experience, I believe that it's with time and regaining personal confidence, that nothing bad is going to happen ... Your brain kind of makes allowances for being a little wonky over time and it does get better and better. However, speaking personally, balance issues raised my comfort zone and hence my anxiety, which does nothing for your confidence or balance issues. Eventually, I went back to the Doc and was given meds for anxiety, which helped. I struggled for too many years and SAH fallout is still a learning curve, but the meds have helped. A walking stick? ... I still have mine and it's a fold up one ... I don't know anyone that's happy to use one, but it's like a security blanket and you concentrate more on the fact as to where the stick is going, rather than the balance issues. Tinnitus? Yep, I have it .... Get some ear or head phones and put some music on ... I find that it helps with walking. xx
  7. One year nasah anniversary!

    Eric, it does and will get easier .... time is a great healer and your confidence will return. Celebrate and take each day as it comes. I hope that the meds make life a little bit easier .... I've been on a beta blocker for many years now and also put on a med for depression (I tended to fight the medication route) .... I've found that both have helped me loads ... and have helped the anxiety and panic attacks....I wish that I'd taken this route earlier! The brain is a complex organ and when things go wrong, it does affect our wellbeing and sends us a little haywire to say the least. Take care. x
  8. I've always believed that any interruption to the supply of blood to the brain, is a stroke. That includes a clot or a bleed on the brain. Our deficits as to what we experience, will always be different ... as to what artery or what has been damaged by the bleed or even a clot. Every part of the brain is different, as to the area that it supplies and the affect that it has with our day to day life. No size fits all and I doubt that you guys would be on this site, if you weren't experiencing problems. Brain injury will always be individual and some of us suffer less and some suffer more mental and physical deficits ..... i'm still on a learning curve since starting the site in 2006, but I do know that talking about it and sharing your own experiences is something that you can't put a value on. xx
  9. Showing on TV this evening at 9pm on BBC2 http://www.bbc.co.uk/programmes/b09rdg0z My Amazing Brain: Richard's War Horizon,2018 Horizon follows the story of Richard Gray and his remarkable recovery from a life-changing catastrophic stroke. The film shows the rarely seen journey back to recovery. Recorded by his documentary film-maker wife Fiona over four years, this film shows the hard work of recovery. Initially bed bound and unable to do anything, including speak, the initial outlook was bleak, yet occasionally small glimmers of hope emerged. Armed always with her camera, Fiona captures the moment Richard moves his fingers for the first time, and then over months she documents his struggle to relearn how to walk again.
  10. Fourteen Years Later

    Happy Anni-versary Super! I'm sure that your travel adventures have inspired many a SAH'er to bite the bullet and go for it too! Have a lovely day and thank you for all of your help and support over the years. xx
  11. With many thanks and I wish you luck! This thread is now going to be closed re: deadline. If you're successful, I hope that you will come back and let us know and even if you're not, well done guys! xx
  12. Hi James, I've passed on your email address. Many thanks.
  13. Huge magnetic forces are used in MRI/MRA scanners and hence why platinum is used to coil aneurysms and is compatible in a scanner. I believe that it's anything with iron in the composition that causes a problem when being scanned and hence why we are asked to take off belts, bras with underwires, clothing with metal buttons, zips, jewellery etc as we or the nursing staff wouldn't know the composition of the metal and whether it would cause us a problem in the scanner. I truly wouldn't worry about magnetic eyelashes. It really won't cause a problem with your coiling. In a MRI machine, I believe that it's about the equivalent of a thousand fridge magnets on the brain when we're being scanned for check ups .... so I would honestly doubt that your magnetic eyelashes would cause a problem at all, on a day to day basis .... but if you were going in to a MRI scanner, you would have to remove them. Just adhere to the warnings on the product. xx
  14. James, I just need to pass your email on .... let me know if this is okay? xx